Eight-year-old prepares for rare brain surgery

Mariah suffers from No. 1 medically intractable symptomatic generalized epilepsy. The rare disorder means the smiley, brown-eyed youngster has sometimes hundreds of seizures every day.

“Our family has been on quite the journey with Mariah’s condition,” said Karen Layman, Mariah’s mother.

To treat the disorder and hopefully eliminate most of Mariah’s seizures, she will undergo a corpus callosotomy, or split-brain surgery, to hopefully prevent serious injury as a result of the seizures.

 Fortunately, Mariah doesn’t have seizures that cause her to thrash around violently or foam at the mouth; however, she does have three different kinds of seizures, some of which are strong enough to make her fall.

“We’ve tried everything else,” Karen said of the decision to have her child undergo major brain surgery. “She has tried and failed multiple medicines and diets, and as Mariah gets bigger, falling as a result of the seizures are hurting her more and more.”

Although the surgery isn’t a guarantee fix, the Laymans and doctors hope the procedure will improve Mariah’s quality of life.

Beginning a journey

Mariah was born March 15, 2003. The healthy baby girl was welcomed into the world by her mother, her father, Milt, and her 3-year-old sister, Shelby.

“She was like any other normal, healthy baby,” Karen recalled. “She met most of her major milestones and seemed to be right on track.”

While Mariah may have crawled, sat up, and walked on a schedule most children her age do, Karen noted her daughter didn’t talk.

“She was almost 3 years old and wasn’t really talking,” Karen said. “She had a few words she could say, but her vocabulary was limited.”

At regular doctor visits, Karen discussed Mariah’s lack of speech with doctors. Because Karen is a talkative person and Shelby was a chatty toddler, doctors figured Mariah took after her soft-spoken father and would talk when she was ready.

In October of 2005, Karen noticed Mariah having what she called, “upper body lurches.” Karen would keep track of how often her toddler was having these small spasms and noticed they were quite frequent.

Karen said although it wasn’t extreme, she had enough concern to make an appointment with Samantha Crosley, the family’s primary doctor.

 Much to Karen’s suspicion that Mariah was having some kind of seizure, Crosley recommended the family visit with a neurologist in Duluth.

“That is where our journey started,” Karen said. “Within a couple weeks, it was determined that, yes, there was seizure activity in her brain.”

Treating Mariah

After determining Mariah was having seizures, the severity of her condition was still unknown and she was prescribed anti-seizure medication.

“We were told kids Mariah’s age often outgrow seizures,” Karen said. “At this point, her life seemed to go on as normal.”

Yet, as Mariah grew older, the seizures didn’t stop. They haven’t stopped since.

“We have tried many, many, many kinds of anti-seizure medications and many combinations of medications and special diets,” Karen explained. “It is always a process of slowing starting, waiting to see if it’ll work, and if it doesn’t, slowly backing off.”

Karen said when she is asked if medications help, she admits she doesn’t know the answer to that question because Mariah is still having seizures.

“We’ve even tried medications that have had a negative effect on her,” Karen said. “There was one medication that made her like a zombie. It completely took the sparkle out of her.”

Although Mariah has kept right on track with her physical developments, Karen said her daughter still has a very limited vocabulary and “the seizures have kind of stuck her at 2-and-a-half (years old).”

Coping with life

Karen admits her optimist outlook on life hasn’t always seen her through.

“There were some dark times,” she said. “Being a caregiver for a child with special needs is draining.”

She credits her faith, family, and friends for restoring the “color in her life,” and encouraging her to seek help with emotional struggles.

Finding time to be a wife and a good mother to Shelby can also be challenging.

“Milt is such a good man and a good dad,” Karen said of her husband of 20 years. “And Shelby is a wonderful big sister. She is very protective of Mariah.”

The family found out Mariah was eligible for personal care assistants and once the PCAs came on board, Karen said she and Milt became more conscientious of “Shelby time” and going on dates with each other.

“I’m really blessed to have the PCAs in our lives. I am so glad I sought the help that was available to us out there,” Karen said.

Sleepless nights also make a frequent appearances in the Laymans’ lives.

“She sleeps pretty well, but that has been a journey as well,” Karen said. “She used to wake up in the night and head over to our room and would seize before she got to us. We were always waking up to the sound of a crash.”

Because Karen was constantly worrying about what the late-night hours would bring, the decision was made to move Mariah into her and Milt’s room.

“It is not ideal, like a lot of things we do, but it works,” she said.

The next step

With Mariah getting older, having “drop seizures” are becoming more threatening to her. This reality has led the Laymans and Mariah’s doctors in the direction that the corpus callosotomy is the next necessary step for Mariah.

“The goal of the corpus callosotomy is to markedly reduce the frequency of seizures leading to falls, which are potentially injurious to Mariah,” said Galen Breningstall, Mariah’s primary neurologist at Gillette Children’s Specialty Healthcare in St. Paul. Breningstall has been with the family since 2007.

The procedure, which is scheduled for Nov. 16 at the Mayo Clinic in Rochester, will sever a band of nerves called the corpus callosum located deep in Mariah’s brain that connects the two halves of the brain. By separating the two halves, doctors hope it will interrupt the spread of seizures, however, generally seizures do not stop after the operation.

Many procedures are done daily at Mayo, however, Karen noted only about four corpus callosotomys are performed annually at the facility.

Following the surgery, Breningstall told The Journal, “The hope would be that Mariah’s reduced risk of injuries will protect Mariah and relieve her family of the anxiety that seizures leading to falls can create.

Karen echoed the expectations Breningstall had for Mariah. “This surgery will hopefully improve her quality of life. The fact that she is going to have brain surgery is big and scary, but not doing anything is big and scary, too. She would keep have seizures and keep injuring herself.”

Although they’re trying to prepare themselves for the next two weeks, Karen is unsure of how she’ll feel when Mariah is taken into surgery.

“My first thought was, ‘What if she dies?’” Karen admitted. “My second thought was what if she is worse than before?”

Both scenarios are unlikely, however, Karen said she has come to peace the fact that her concerns are fears for herself, not fears for Mariah.

“Regardless of the outcome, I feel confident that surgery is the right thing to do for Mariah’s sake,” Karen said. “Mariah is such a gift and she makes people feel so loved. She touches people’s hearts. Everything is in God’s hand and He will take care of her.”